Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Doctors

natalieb

By natalieb
in Doctors

Recommended Posts

natalieb Rookie
natalieb
Posted

I am 39 years old and suffered from undiagnosed celiac disease for 6 years. I finally got a good doc in pittsburgh who was able to dianose what my other gi doc couldn't do in 6 years. The problem is that I have soem nerve damage due to this disease. My gi doc recommended that I see a neurologist but he didn't give me a name. Needless to say, I found someone on my own and went to him today. It was a joke. You see, 4 years ago, I had a ct of my brain and there was calcification on my brain stem. Now that I know what is wrong with me I take no ones word. Due to the vision problems I have occasionally and the numbness on my left side (arm and leg at times), I wondered if all of this could be tied togehter. I stumbled across some research linking calcification of the brain and celiac disease. This doc today clearly knew nothing about celiac disease and the neurological effects of it. He is going to get my old ct scan of my brain and review it. That is, after he is done fighting with his contractor on the phone in his high glitz office in pittsburgh. I could clearly tell that he knew nothing about celiac. Can anyone recom. me to a neurologist that is knowledgeable with the effects of celiac disease or even knows what it is? I feel like I did 6 years ago when no-one believed in the medical profession that anything was wrong with me other than irritable bowel. Help please. natalie

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


AntiGluten Rookie
AntiGluten
Posted

Sorry, I dont know of any doctors. But one thing I've definately learned from having this disease is that most doctors are idiots. They think they know everything and that whatever they say can't be wrong. It makes me mad that medical schools in this country tell these people that celiac is so rare that no one that comes into your office can possibly have it. Luckily I had a good doctor that keeps up with current research and tested me the first time I saw him. That is very rare with this disease. I think its a conspiracy of the prescription drug companies that keep this disease hush hush because it's misdiagnosed for so many things such as IBS that a magical little pill made and sold by these companies will make alll better. If the patient is told the truth and that all they have to do is simply change their diet then the drug co.'s lose a sale.

angel-jd1 Community Regular
angel-jd1
Posted

has anybody seen the commercial for that new drug Zelnorm. It is for women with IBS. It totally lists symptoms of celiac and then tells people to go get Zelnorm!! What a crock!!

Just my opinion!

-Jessica :rolleyes:

Guest jhmom
Guest jhmom
Posted

Zelnorm is for IBS with constipation well I called my regular doctor and her nurse told me they give it to their patients that have diarrhea!!!! Can you believe that? My GASTRO doc said that was a NO NO! Talking about clueless!

Also while reading online about IBS it stated that when IBS patients started a gluten-free diet, they improved WELL I WONDER WHY?

  • 1 month later...
Wish Newbie
Wish
Posted

I'm sorry to say that I don't know of a good neurologist. However, I'm from Pittsburgh as well and I'm not sure if you know this or not, but there's a great support group in the area. If you're not involved with the group yet and are interested, just e-mail me and I'll give you the contact information. I'm sorry you're having such horrible experiences with the medical community and I hope someone comes through with the information you need.

~Marie

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,880
    • Most Online (within 30 mins)
      7,748
    juliehegarty
    Newest Member
    juliehegarty
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Probably celiac but also confused

      By trents · Posted

      Welcome to the forum, @terrymouse! Your GI doc is correct. Going gluten free now will allow healing to occur in the villous lining of the small bowel such that the endoscopy/biopsy may not show the damage to the villous architecture that is characteristic of celiac disease. Since your celiac blood antibody tests results are on the low side and don't "scream" of celiac disease I think it is important to go forward with the endoscopy/biopsy while still consuming gluten to ensure it will not be a wasted effort. The last thing you want is to have two different test modalities that unnecessarily contradict one another. So, unless the continued consumption of gluten poses an immediate and significant threat to your health, my advice is to (excuse the pun) "gut it out" until the endoscopy/biopsy happens. There is also the option of temporarily going gluten free and then undertaking a "gluten challenge" in the weeks leading up to the appointment in September. Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of the procedure. But I would certainly give it longer than two weeks to be sure. And in view of the fact that it could happen sooner if there is a cancellation, I would encourage you to not go gluten free until after the procedure if your health permits. By the way, what are your symptoms? What led you to investigate celiac disease as the cause of your medical issues?
    • RMJ
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By RMJ · Posted

      I had an endoscopy where there was no visible damage but biopsies showed damage. I even asked beforehand if the endoscope had good enough magnification to see the villi!  I hope you get a clear answer from the biopsies.
    • terrymouse
      Probably celiac but also confused

      By terrymouse · Posted

      I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? 
    • knitty kitty
      Refractory Celiac disease - what to do

      By knitty kitty · Posted

      Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac.  What did your doctor recommend? What about your Vitamin D?  It helps regulate the immune system.  
    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      @knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily 
×
×
  • Create New...